I wish I knew their secret...

So often, sleep alludes me.  I need rest, but it's not always easy to get.

I really wish my cats could teach me their sleeping secrets.  Here's some pictures just for laughs!

Blue :(

Hello to all my blogger friends.  Thanks again for taking your time to read my blog.

One of the hardest things about chronic illness is keeping a positive attitude.  Usually, I feel like I do a pretty good job of it.  If I can find a way to laugh about something that should make me cry, I do.  I've learned to be happy even while being in immense pain.  I try to find hope even when all seems hopeless.  So when I feel down, I try pick myself up.  Most of the time I can...

But the last few days, I can't help it.  I'm just blue.  I'm living in the a state of melancholy.  I'm trying very hard to shake it, but right now, I feel like Eeyore, with a constant cloud over my head.

It's been a rough week.  I've been dealing with kidney stones (again, ugh!) and I think I also have some sort of bug making me feel more rundown, more achy, which is bound to make me feel more emotional.  JDMwise, though my strength has stayed about the same--not better, but not worse--my skin is flaring, and my stomach is not happy with the illness right now.

The worst thing about chronic illness is that it's always there.  It's that constant companion that just doesn't want to leave.  I've tried multiple things to get rid of it; yet it's still there.  I try to stay strong, stay positive, but at times the burden just feel so heavy.  Sometimes a good cry is warranted.

One thing I think that has me down, is just the many personal failures I feel I face each day.  Compared to last year, I am doing so much better and I'm very, very thankful for that.  Yet, there are still so many things I try to do on my own and fail at on a daily basis.  Putting on my own clothes.  Getting off of the couch on my own.  Getting off of the toilet (even with a riser) on my own.  So many little things I want to do, but can't.  I try, try, try, but I fail.  These are tasks that most would call simple; yet they are huge obstacles for me right now. Though I'm so thankful I have a mom who is willing to help me with the things I cannot do myself right now, and I'm thankful for my aunt Lisa and Jaclyn for coming over and helping me with some of those things when mom needs to run errands, I just really miss being able to do those tasks on my own.  I dearly miss my independence, my ability to take care of my basic needs on my own.  These abilities have been gone for well over a year now.  I know it's not my fault, that I didn't ask for this and that I'm fighting with all that it is in me; but it still hurts.  It's a constant reminder of how weak I am and there are days it's really hard to keep my head up.

Another thing is that my birthday is a week from tomorrow.  I remember when I was a kid,  I just could not understand why anyone would be sad about a birthday!  Now, I kind of get it.  It's not that I'm upset about getting older.  That age thing really doesn't bother me.  It's just this is not the life I think anyone wants at 28.  There are so many things I desire for my life; and I wonder if they are even remote possibilities.  I know that thinking about the future and worrying about it does me absolutely no good; I know that if this is the path God has me on there is a reason for it; but the lost dreams and disappointments sting sometimes.  I'm just so tired of this stupid illness stealing so many things from me.

I will get past this eventually.  I debated even posting this, as I really don't want this to seem like I'm complaining.  I know, even in the midst of the storm, I am still so abundantly blessed, that I still have so much to be thankful for.  However, this blog is about awareness, and I realize that no one can truly relate to the war I go through on a daily basis if I don't talk about my weaker days, my tougher days.  Vulnerability is still something I'm working on.  I'm still trying to find that balance of what is being too open and what is not being open enough.  I'm still figuring out the balance between making people aware without complaining.  The main reason I'm posting this is so that others going through something similar will know, yes I have days I'm discouraged too.  I also feel like Christ really can't be shown through my weaknesses if I don't humble myself enough to show them.

If you are reading this, just please pray for me.  Not just my for my physical health, but also for my emotional, mental, and spiritual health.  This battle is more than just physical.  These disease has taken so much from me; and I am doing my best to remind myself that it cannot take my joy, my peace, or my faith.  This week has just been rougher than normal emotionally.

I guess I should end this with a mini update about treatment plans, although there is not much to report.  I'm still in medication limbo, waiting on the doctor to get back to me.  I guess if I don't hear from her soon, I'll start calling and bugging her until we hear back.  I have heard others have positive results with a couple of the options, so I hope and pray that God will lead me to the best possible option for me.  At this point, I would be so grateful for any relief.  

Thanks so much for reading, I'm signing off for now.  I think I'll go do something that makes me happy, like spend some time with Ariella and Toby (pictured below).

My verse for today, to remind me there is purpose in suffering:

Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we boast in the hope of the glory of God. Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.-Romans 5:1-5

Acthar, Remicade, Orencia..... oh my.....

First of all, thank you to everyone who asked to be added to my update list.  This is how my blog updates will come to you from now on!  I appreciate you taking the time to read my blog, and I thank for your support and your prayers. :)

The last few weeks I've been doing a lot of research on certain medications that my doctor has mentioned as possibilities, and also tried to see if I could find any information on anything new out there.  I emailed my doctor this week with all my questions and concerns about each option, and so now it is just a waiting game to see what my doctor thinks regarding the next move.  I have felt better just having the email completed, now it is just a waiting game.  There are times she gets back to me quickly, other times it takes awhile for her to complete research on her end of things, so I have no idea how long it will be before I hear from her.

I am praying for a very clear peace about the next step.  Every time I feel like maybe is the right next step, then I'll have doubts about it.  I feel very uncertain, and not at complete peace about anything at this point.  Everything is experimental.  All the "tried and true" methods have failed for me.  So everything is somewhat a shot in the dark, with very little proof on whether or not the treatments are even going to be helpful.  Information on each possibility is very scarce.  Each study only has a few people in them.  When you have a rare disease, there are not that many people to practice on!  However, each possibility is being tried out there for a reason, which means it is thought to have the potential to help, possibly help more than anything I've tried thus far.  That is what I am hoping for!

It can be very overwhelming when researching the medications.  I often wish that when reading about medications, that they would have GOOD side effects.  You know, something like:

This drug may have the ability to make you ridiculously good looking.

This drug may give you superpowers, like the ability to fly.

This drug may raise your IQ instantly!

Instead, these are some of the warnings on the drugs I've been researching and warnings on the drugs I've taken through the years:

This drug may cause a lupus-like syndrome.

This drug may cause bone loss.

This drug has the potential to cause certain cancers.

This drug has been linked to a fatal brain disease.

This drug may cause death.

It's pretty scary to read stuff like that.  I know that I've been on a many medications that were potentially very bad, and yet while the best hasn't happened, the worst has yet to happen.  I'm very thankful for that.  More so, as my mom keeps reminding me, God is in control regardless.  And she is right.

I also know that some sort of action has to be taken, as I don't want the illness to be out of control.  I have had some very, very difficult times with this illness, yet I have not seen the absolute worst of it yet.  It's been very bad and very serious at times, yet I know others that are or have been in much worse shape than me.  It's not a pretty illness by no means, so if something can be done to help stop it, I need to try it.

That said, it doesn't keep me from feeling a bit scared and tentative about it.  I've had so many roadblocks and setbacks throughout the course of this illness that I'm not sure how I'll emotionally handle another disappointment. So I am really praying that the next course of action will bring some relief.

Another prayer request for all my prayer warriors out there:  because all these medications are experimental, it means that it may be a fight with the insurance company.  We had to fight for a treatment for almost 8 weeks once.  Please pray that whatever option is chosen, whatever option is best, that the doors will open in this area as well, that things will be settled quickly, as I do not want to wait too long.  I tolerate things better when I am stronger, and too long of wait could cause me to be too weak to tolerate anything well.  We are also concerned about the financial side of things, as some of the options are well into the thousands and we are not sure how that will all work out.  For instance, one potential option that would only be for 12 weeks is a total cost of $36,000!  So those are definite areas of concern, and I appreciate your prayers in those too!

I need to sign off for now.  I hope that this update makes since as mom & dad are cooking dinner and it is kind of noisy out here in the great room.  It's not that they are really that loud, it is just that my mind doesn't handle any kind of distraction too well these days!  Fatigue will mess with your concentration, that is for sure!

Thanks to the "Jesus is Love" facebook group for the photo above.

"The hope that belongs to our calling should be a dynamic force in our lives, encouraging us to be pure (1 John 2:28-3:3), obedient (Hebrews 13:17), and faithful (Luke 12:42-48). The fact that we shall one day see Christ and be like him should motivate us to live like Christ today."-W. Wiersbe